Monday, July 16, 2012

Follow Jen on Caring Bridge

Hello Friends:

It has occurred to us that some people have not been aware of Jens recent health decline and ongoing story.

In March 2012 Jen became ill and spent 16 days of March in the hospital.  Her fight continues and the details now can be found on her Caring Bridge Page:

Please join us there.

Thank you for your ongoing support for Jen's Fight with Breast Cancer.


Thursday, July 28, 2011

New Test Results and The Tittsburgh Nation!

Hi Everyone,

I actually have some good news to share for once. As you know I’ve been dealing with the ONJ, Osteonecrosis of the Jaw since February. Since it first developed I’ve had 4 jaw surgeries to close it up. I had some hits and misses and it was looking great until recently. It’s still sore and I continue to deal with it daily but I think we’ll eventually get it under control. That is not the good news by the way.

As you might remember, they had to pull me off my meds, except the Faslodex, back in February because of the side effects. I was pretty sure that things would go south from there pretty quickly because how could I be off my meds and still be healthy? But as it turns out my tumor markers have stayed steady and I feel GREAT! So much so that I’m working out again, I’ve lost 37 lbs., and have had to replace just about everything in my wardrobe. I have a nice credit card bill to prove it too. That’s not the good news either.

Last week I had another PET/CT scan, which we were nervous about because I hadn’t had one in 9 months and nothing good EVER comes from me having a PET CT scan. Until this time. So, even though I’ve been off my meds for 6 months, my soft tissues are still 100% clear, which was the best news they could have ever given me. The metastatic activity in my bones is stable except in 2 small areas. My left clavicle and my left hip bone showed signs of increased activity, and no one is worried about either of these spots.  Yeah!

So we’re just going to keep on doing what we’ve been doing, Faslodex, working out and prayers. Those all seem to be working just fine these days.

I’ve crossed off another bucket list item, a weekend in Santa Fe with my girlfriends. It was great! We had a ton of fun and I highly recommend Santa Fe for anyone. It’s gorgeous, there is a ton to do and the food is fantastic. The wine and margarita’s aren’t bad either! The weather is such that my back didn’t hurt when I was out there, except after we went horseback riding. But it was worth it! It’s so beautiful out there.

JR and I are working on our trip to San Francisco / Napa Valley / Muir Forest to see the Redwoods in September, a trip to Alaska and a couple other things too.

The Tittsburgh Nation is busy training for the two big breast cancer fundraising events.  Last year I participated in both the bike ride, and the 3-Day 60 mile walk.  This year I am only biking.  Nicky, Stephanie and the rest of Team Tittsburgh will be walking 60 miles in the Susan G. Komen 3-Day in late August.  J.R. and I will be at their beckon call throughout the three days to support the team.

The Tittsburgh Wheelers are getting ready to ride again in the 4th annual Hartford & RE/MAX Results Breast Cancer Ride on August 6-7.  This 110 mile ride over two days is fun and challenging, but most importantly all money raised goes to two great beneficiaries.  Open Arms of Minnesota delivers meals to families touched by breast cancer, and the Minnesota affiliate of Susan G. Komen continues their research and awareness campaigns.
GUEST AUTHOR J.R. SAYS:  I am confident that the work done as a result of monies raised at these events have extended the life of Jen and countless others battling breast cancer.  You may be asking, "What can I do to help?"   Well I am glad you asked. Thank you to those of you who have already supported someone on Team Tittsburgh in the walk or The Tittsburgh Wheelers for the ride.  Our walking and biking teams alone hope to raise nearly $36,000 for breast cancer and we are a bit behind.  Our team goal for the Hartford & RE/Max Results bike ride is $16,000, and we are $4,000 away with one week to go.  You may click on the link below, select DONATE and search for the Tittsburgh Wheelers, or simply search for a rider........let's call her Jen Anderson.  She is riding 110 miles with stage 4 breast cancer in stifling heat.  It takes much less effort to make a few clicks on a computer, donate what you can, and consider yourself part of the Tittsburgh Nation Team!  C'mon, it will be fun.  For inspiration, watch the video featuring Jen speaking at last years event.  Thank you for allowing this shameless plug, but clearly we are passionate about these efforts and you CAN help make a difference. Plus our jerseys are about as cool as cool gets.
Click Here:

Look for J.R. and Jen on KARE 11 news at 4pm July 29 representing the Hartford & RE/MAX Results Breast Cancer Ride with Pat Evans in his 'Peddling with Pat' segment. Click here to watch the segment.  Thanks Pat Evans and KARE 11

We are looking forward to the wedding of Nicky & Zach on October 15 and enjoying the pre-wedding activities and fun.

Thank you to everyone for your continued prayers, love and friendship, I really appreciate it!

Have a great day and love to you all!


Monday, March 7, 2011

The Good, The Bad, and the Bucket List

Hello Everyone:

I have some significant updates for you all on my health. First the good news. My tumor markers are back in the normal range. Yeah! I came in with a 30 which is the lowest it’s been in about 2 years. So the meds are doing their thing. Now for the bad news. I’ve developed a rare side effect from the Zometa called ONJ or Osteonecrosis of the jaw.

What is ONJ? “Osteonecrosis of the jaw (ONJ) is a severe bone disease that affects the jaws, including the maxilla and the mandible. Damage and death (-necrosis) to areas of jaw bone (osteo-) occurs as a result of reduced local blood supply (ischemia). The condition is thus included in the general category of ischemic or avascular osteonecrosis (literally "dead bone from poor blood flow.").
Various forms of ONJ and a number of causes have been suggested over the years. In recent years, an increased incidence of ONJ has been associated with the use of high dosages of bisphosphonates, required by some cancer treatment regimens.” Thanks Wikipedia!

So what does this mean? We were referred to the leading expert on ONJ at the University of Minnesota dental school, Dr. David Basi. He’s been studying ONJ for the last several years and is THE guy you go to if you get this. By the way I am only the second of over 8,000 patients of Dr. Bowers to get ONJ. Awesome!  At this time, they don’t know why Zometa or bisphosphonates causes ONJ and there is no real treatment or cure for the disease. However, Dr. Basi has had some success with surgery to remove the dead bone and let the body heal up naturally. The body is amazing. 

Because I’ve developed ONJ, Dr. Bowers cannot treat the cancer part of my disease until this ONJ business is cleared up first. It’s doubtful that I will receive Zometa again, which will probably be OK because I’ve had 30 doses of it already which is the equivalent of 30 years of medication to someone with osteoporosis. I’m also not receiving Avastin because it causes me to get mouth sores for a few days after treatments, and the thinking is that this was the catalyst to the ONJ developing in the first place. 

At first Dr. Basi said the ONJ was stage one and that he’d like to just watch it, so basically do nothing for a while. I was OK with that plan. Moments later he talked to Dr. Bowers and she told him “No, that’s not an option. Her tumor markers are normal and if you’re going to do any type of treatment on her now is the time to do it.” Again, if I have signs of ONJ, I can’t get my other meds. So on Wednesday March 2 I went in for oral surgery to have part of my jaw bone removed. I lost a tooth in the deal too which kills me the most. I’ve never had a cavity, I’ve never had braces and my teeth are all but perfect. Until now.  I did, however, get a very nice gift from the Tooth Fairy, a bottle of 2007 Opus One wine. 

How do I feel? Well it hurts like hell right now and I can only eat soft food or drink liquids. Side note. Jim and Sue Edberg heard about my plight of not being able to eat solid food so Jim being the amazing cook that he is, whipped up a batch of his world famous mushroom bisque soup and brought it over yesterday with a bottle of wine to sooth the pain. Apparently the Tooth Fairy and the Edberg’s shop at the same wine store. Thank you Jim and Sue!

So, I’m not sure if the surgery will work or if we’ve done something to make it worse. Don’t know yet, only time will tell. I’m seeing Dr. Basi tomorrow, hopefully to get some sutures removed and to see what he thinks about the progress we’ve made. In the meantime, Dr.  Bowers is holding off giving me any of my meds until we get a handle on this. She said I could be off these drugs for up to 6 months and if my markers stay in the normal range or even slightly elevated range I could be off the drugs longer. I’m OK with that. I will keep you all posted with any significant changes or progress reports as they come up. 

Now for the bucket list update. 

I have to say I’ve had a heck of a lot of fun in 2011 so far. I’ve crossed off two more items in the last couple of weeks and have plans for several more in March and April.

Since I was doped up on Vicodin from surgery this past weekend I wasn’t much fun to be around, those of you who have seen me on Vicodin know that it makes me slobber and it’s hard to put a sentence together. However, I rallied and J.R. took me to Wabasha on Saturday to the National Eagle Center. It was a beautiful sunny day and we saw about a dozen bald eagles flying around and got to see some previously injured eagles that can’t be returned to the wild, up close and personal. They’re so cool! I learned a lot about eagles and they really are majestic. MN has the largest nesting population in the lower 48 states at over 1300 nests. That’s a lot of eagles. Eagles are cool. Check!

The previous weekend J.R. and I drove up to Lutsen, about 90 minutes East and North of Duluth along Lake Superior, for a ski / dog sledding weekend adventure. Of course we picked one of the coldest weekends to do this, but other than the temperature, the weather and weekend were perfect! We checked in late Friday night and had some champagne in front of our fireplace, it was so nice. We got a late start on Saturday so we skied a ½ day, which was more than enough time. The skiing was great and we got a ton of runs in, I skied really strong that day. We went back to the hotel for dinner and cocktails and more sitting in front of the fireplace. It was a great day. 

On Sunday when we woke up it was snowing, the big fluffy flakes of snow, it was beautiful! We drove about 40 minutes north to Grand Marais, which is about 60 miles from the Canadian border. We got to the camp and met Nancy Lang, the proprietor and master of dog sledding. She was wonderful! We got our tutorial of how the day was going to go and what it was going to be like to drive our own team of dogs. The plan was to have 2 teams, one team with a driver and a rider and another team of just a driver, aka musher. 

Nancy had her team of 11 dogs to pull two people and the other team had five dogs for the single musher for the first half, six dogs for the second half.  At first Nancy and her friend were concerned about me riding at all with my health history, apparently it can get real bumpy and be hard on the back and bones. But we told her we went skiing the day before and as much as I hate to admit to anyone reading this, I had a small wipe out. Yes folks, I still occasionally fall down on skis, hard to believe I know. Anyway…..

The first two miles out of camp are technically very challenging and very bumpy so we were going back and forth of whether I should ride with Nancy or mush out of there. I decided to mush. It was awesome! Actually it’s more like water skiing than anything. You have to hold on and steer the sled with your feet like you do with water skis, all while working the brake to make sure you do not run over the dogs going down hills.  The trails were really narrow through the woods but it was so beautiful! Big pine trees, white birch trees, the snow was falling and it was so quiet. You could hear the dogs running, hear the sled skis on the snow and you could practically hear the snow hitting the ground it was so quiet out there. I could not wipe the smile off my face. About an hour and a half into it we hit the half-way point and switched sleds so J.R. could mush and I could ride. Riding was fun too; you get all wrapped up like you’re in a papoose. And it was warm.

When we got back to camp the dogs just chilled out and rested and we got some great pictures. We also had some more time talking with Nancy. We love her! Her son is a cancer survivor and is in full remission. He mushes dogs up in Alaska during the summer. Nancy and her dogs will be joining him this summer. If you have not been dog sledding and like snow and nature, I highly recommend adding this one to your bucket list, it was a really great experience. Dogsledding..check!

We’re going to cross off some pretty cool things in March and April too. We’re going skiing with my dad and Roseann in Steamboat at the end of the month. We’re really looking forward to this. I’ve substituted “ski Jackson Hole” with “ski with my dad any damn place he wants”. I’m just going to have to be satisfied with knowing that I could ski Jackson Hole if I ever got the chance. 

I’m also going to drive a ’69 Camaro. A past co-worker of mine here at Loffler has a friend who has a ’69 Camaro and agreed to let me dive it this spring. How cool is that? We’ll also be heading out to San Francisco / Napa Valley / Muir Woods to drink wine, see the sights and visit the giant Redwoods around my birthday. Some very dear friends from our Dictaphone days have helped with making that a reality for me. Thank you so much!

April 12th we’re going to see Robert Plant perform at the State Theatre and hopefully can arrange a meet and greet. Keep your fingers crossed. And if the opportunity arises I’m going to try and get hang gliding in somewhere. I was hoping for hang gliding in Steamboat but that might not happen due to the height of the mountain. We’ll see, J.R. is working on some kind of hang gliding adventure.

Well that about does it for me, thanks for listening. If you could send up some prayers for the surgery to heal properly I sure would appreciate it. I hope this message finds you all well today. 
Take care and God bless!
Love to you all, 


Tuesday, March 1, 2011

It's all about the Meat.....and the Avastin.

Hi Everyone,

An Avastin update and some more bucket list items have been checked off. January 10, 2011, Business Week, published an article on Avastin. In my last update the FDA was removing its recommendation for Avastin in breast cancer due to the high risks and low life expectancy for patients. After our meeting with Dr. Bowers, she said she would keep recommending Avastin as long as the insurance company would continue to pay for it regardless of what the FDA said.

Here are some pertinent paragraphs from the Business Week article and the link if you would like to read the whole thing.

Jan. 10 (Bloomberg) -- A decision by WellPoint Inc. and other insurers to keep paying for Avastin in breast cancer may help Roche Holding AG avoid a $1 billion drop in sales after U.S. regulators said the drug doesn’t treat the disease.
WellPoint, UnitedHealth Group Inc., Aetna Inc. and Humana Inc. say they’ll keep covering Avastin based on a recommendation by the National Comprehensive Cancer Network. The nonprofit alliance of oncologists, some of whom have disclosed financial ties to Roche, says it plans to keep recommending use of Avastin in breast cancer based on the current data.
The U.S. Food and Drug Administration proposed withdrawing Avastin’s conditional approval on Dec. 16 and will review an appeal from Basel, Switzerland-based Roche before making a final decision. The reaction among insurers may be a case study in how they will resolve conflicting opinions in an era of targeted therapies that don’t work for everyone, said Len Lichtenfeld, the deputy chief medical officer at the American Cancer Society.
“Health insurers have been vilified for years now because of their policies” in covering drugs, Lichtenfeld said in a telephone interview from Atlanta. “It may be a matter of them choosing their battles.”
The National Comprehensive Cancer Network guidelines are recognized in more than 100 countries as standards in how to diagnose, treat and reduce the risk of cancer. Minnetonka, Minnesota-based UnitedHealth, the largest U.S. insurer by 2009 revenue, became the first company to base coverage on the recommendations in 2008. WellPoint, Hartford, Connecticut-based Aetna, and Louisville, Kentucky-based Humana followed.
One-third of the 27 members on the network’s advisory panel for breast cancer drugs have helped in clinical trials or consulted for Roche’s Genentech division, which developed Avastin, according to disclosures on the organization’s website. The advisory group is composed of oncologists, pathologists and a patient representative.
“The widespread acceptance and application of NCCN Guidelines” by insurers, doctors and patients “speaks to the recognition and acceptance of the transparency, credibility and authority” they have, McGivney said in an e-mail. “No other organization in medicine has attained this level of trust.”
WellPoint’s internal advisers who decide what cancer treatments to cover “recognize that the NCCN’s compendia on cancer care are strongly supported,” said Alan Rosenberg, vice president of medical policy for the Indianapolis-based insurer, in a telephone interview. “We consider carefully what the FDA looks at but we try to figure out what’s reasonable from a benefit perspective for our members.”

So why am I telling you this? Because our insurance company is Aetna, one of the companies mentioned who will keep paying for Avastin. J I’ll keep you posted on any new developments.

Now for the bucket list….

So I was catching up with one of my customers, Jeff Jelinski, who we just LOVE, and he’s looking at my bucket list and asks me why Bologna Days isn’t on the list. He sees Turkey Bingo with Nancie Pass and go to a Meat Raffle, but no mention of Bologna Days. Since I’ve never heard of Bologna Days I had to ask and here was his answer.

On Wednesdays in Genola, MN, there is a bar called the Red Rooster, got to love the name, which has all you can eat cooked bologna from 11:00am – 1:00pm for lunch. Get this; they serve it with buttered white bread, ketchup and mustard for $6.00. And, you must drink beer. My first thought was, sounds awful and a riot, I’m in! The next question from Jeff was “do you have any camo to wear?” and then he followed that up with, “please don’t show up in a suit”. I do not have any camo, I have jeans. Jeff and I headed over to the Red Rooster and I’ll be damned if every person in Genola was there eating bologna. No kidding there must have been 250+ people having lunch, drinking beer and wearing camo. It was beautiful! We had a ton of fun and believe it or not, the bologna was delicious! So its official, I’ve been to Bologna Days in Genola. Great, great fun! Thank you Jeff!

Two days later…..we went to a meat raffle. If you remember, I had never heard of a "Meat Raffle" until recently so of course I added it to the bucket list. This was also a ton of fun. Of course it snowed like Armageddon that night so some people who planned on coming couldn’t get across town but we had a great showing none the less.

We arrived at The Rail Station, we were late, the Mitchell’s and the Bartel’s scored a great table, and the meat raffle had already started. The various meats available were laid out on the pool table next to the wheel. Why wouldn't they be. Mostly steaks from what I could see. We bought in and didn’t win. Several rounds were like that. But the drinks were strong, the food was good and the company was even better. No complaints here.

I finally won! I picked out some beautiful rib eyes. After the meat was all gone they started raffling off gift certificates for meat. Nice! Mitch won the next round, a $20 gift certificate. Two rounds later, I won again! Another $20 gift certificate! Whoo hoo! Who doesn’t like meat?

It was a really fun evening with friends and meat. Thank you Mitch and Paula, Bart and Vickie, E.B. , Jim and Sue, Eddie, Liam, Big Mike, Robin, Nicky and Zach, Andrea and Nick and Jason. And my Anderson, thanks for getting me home safe and sound with my steaks and gift certificate.   I love you guys!

So the bucket list adventures continue. I’ll keep you posted on my progress and bucket list fun as it unfolds. I hope this message finds you all well and I hope you are having a great day today!
Love to you all,

Thursday, December 30, 2010

Avastin and Bucket List Update: Beers with the Bus........Check!

Hello Everyone:

Jerome Bettis and Jen on the set of The Jerome Bettis Show
I will get to the Jerome Bettis story and bucket list item soon.  First a medical update.

 Some of you may have been paying attention to the news lately and heard that the FDA is revoking “Avastin” from the market. This is one of the drugs that I am taking and is not very good news although I found an article dated December 28, 2010 that the manufacturer, Genentech, is requesting a hearing with the FDA before anything takes effect. The next 5 paragraphs are completely plagiarized. I cut and paste a couple of articles together instead of reinventing the wheel.

The U.S. Food and Drug Administration did something highly unusual on Dec. 16: It revoked its previously granted approval for using a drug called Avastin to treat late-stage metastatic breast cancer. Avastin reduces blood flow to tumors. This allows it to halt the spread of breast cancer in some patients. In one clinical trial, 52 percent of Avastin users saw their tumors stop growing or spreading to other parts of their bodies. In most other breast cancer patients, Avastin acts as a pause button, sparing women from deteriorating further – at least temporarily. On average, Avastin can extend patients' lives by four to five months. However, some "super-responders" react especially well and enjoy unexpected years of additional life. (This is my plan)

The FDA has started the process of removing the breast cancer indication for bevacizumab (Avastin, by Genentech), saying the drug is too toxic and confers no survival benefit for women with HER2-negative metastatic breast cancer (MBC). The drug has been shown to improve progression-free survival (PFS).

The FDA’s decision was based on four clinical trials: E2100, AVADO, and RIBBON-1, which studied bevacizumab in the first-line treatment of MBC, and AVF 2119g, which studied it as second-line treatment in this setting. “Today’s announcement is the first step in a process and will not have immediate impact on use of Avastin to treat breast cancer or the drug’s availability,” Janet Woodcock, MD, director of the FDA’s Center for Drug Evaluation and Research, said in a press briefing. “For patients, this means no disruption in treatment. Their access to Avastin will not be affected.” She added that oncologists currently treating patients with bevacizumab should use their judgment in deciding whether to continue with the drug or explore other treatment options.

Dr. Woodcock emphasized that the FDA’s decision did not take into account the cost of bevacizumab, which is estimated at about $100,000 per year per patient. “Reimbursement is a decision that is made by insurance providers which often use different criteria from those used by the FDA when we determine that a drug is safe and effective for marketing,” she said. “At this time, the CMS [Centers Medicare & Medicaid Services] will not be making any changes to its reimbursement policy for Avastin and is waiting until the resolution of this process before deciding whether to make any changes.”

Meanwhile, as the FDA was announcing its decision, the European Medicines Agency (EMA) declared that bevacizumab in combination with paclitaxel remained a valuable treatment option for women with MBC, claiming that the benefits of the combination outweighed the risks. (I’m not taking paclitaxel at this time)

What does this mean for me? Well everything is still up in the air as you can see. Dr. Bowers is keeping a close watch on the situation and will make whatever recommendation is necessary at that time. As of now, I received a dose of Avastin on December 20th  and will continue to do so until I hear differently. J

Onto good news now. The bucket list is coming along very nicely. I’ve crossed off 3 items in the last 2 months and they were a blast!

Bucket List #16 Turkey Bingo!
Nancie and Jen with winning cards.
Yup, you heard me right. On November 19th we met our friends Nancie and Terry and what seemed like the entire City of Carver for Turkey Bingo at City Hall for a fundraiser for the Carver Blackhawks. Her family and friends are WONDERFUL and they welcomed JR and me with open arms. We had a blast! We started the evening with cocktails, shocker, down the street and headed up to City Hall shortly thereafter. The place was packed and the games were fast and furious. 41 games in total, lots of turkeys to win. Little did I know that mixed into this Turkey Bingo was a meat raffle. Don’t panic everyone, I’m not crossing meat raffle off the list because this was technically “turkey bingo” and NOT technically a meat raffle.

In between games there were lots of prizes to win too. If my memory serves me correctly, Nancie’s gang and JR and I walked out of there with a City of Carver baseball hat, City of Carver sweat shirt, 3 gift certificates for bars down the street, around $60 in cash, a pack of steaks, a ham and 5 turkeys. We rocked at Bingo; I don’t want to talk about it. After Turkey Bingo we did a little more bar hopping with Nancie and Terry. What a fun night! Thank you Nancie, Terry and the City of Carver!

Bucket List #31 – Learn to make gravy
I had LOTS of offers to learn how to make gravy, where have you people been? Kari Mitchell helped set this one up for me. I took up the offer from the folks at Open Arms of Minnesota. They are one of the recipients from The Breast Cancer Ride that The Tittsburgh Wheelers participated in this summer. For those of you who don’t know who they are, they provide nutritious meals to cancer patients and their families during treatment. They are really a top notch organization.
Gravy Lessons at Open Arms of Minnesota

On November 24th I went over to their new building to learn how to make gravy. I was met by their executive chef Nick Collins who got me prepped with an apron and hairnet, no one looks good in these by the way, and after a thorough hand washing I went to the biggest kitchen I’ve ever been in. It was there that I met Austin, who is the greatest gravy making instructor in the world. I learned so much that day! It was better than watching Food Network and I had a great time getting to know Austin and learning how to make gravy. I’m the gravy master. Bonus, I brought some home for our Thanksgiving dinner the next day. It was delicious. Thank you Nick, Austin and Open Arms of Minnesota!

Beers with the Bus!

The Bus and Jen in the Owners Suite of Jerome Bettis Grill 36

Last but definitely not least, Bucket List #37 should be Bucket List #36, and I call myself a Steeler fan. Have a beer with Jerome Bettis. I swear you cannot make this one up. As it turns out several of you reached out to Jerome Bettis for this one, thank you very much. But, his people responded to our friend Jeff Wille in Colorado. That must have been some letter you wrote Jeff, I cannot thank you enough for setting this one up.

As it turns out Jerome Bettis is in Pittsburgh every weekend of a home game to tape “The Jerome Bettis Show” at one of the local TV stations, WPXI, and after the show he visits his bar, “The Jerome Bettis Grille 36”. So we flew out to Pittsburgh the weekend of December 10th to meet the Bus. How cool is that?

Jen on the set of The Jerome Bettis Show
JR and I first were invited to the station to watch a taping of the show. We showed up at 2:00 pm at the station where we were taken on a tour by some of the local talent and station manager. There were a couple other groups there to watch the show too. There was a group of kids from a local college and a group of police officers who were there to get a signature on a “corn toss” game board to raise money for one of the daughter’s of a fellow officer, she’s 19 and was diagnosed with ovarian cancer. Heart breaking.

When we went into the studio we were told to sit in specific seats to get the best view of the show and I was one of the first brought up to get my picture taken with Jerome. He’s HUGE! After Jerome had his picture taken with the remaining audience members we were taken to the green room to hang with him for about 30 minutes while he changed into street clothes and signed a bunch of things. The rest of the audience went to a conference room to wait for him. We’re so cool.

Gifts from The Bus and the staff of Jerome Bettis Grill 36
 After the station we went to his restaurant next to Heinz Field. When we got there we asked for the manager Mike and he escorted us to the owner’s suite, a.k.a. man land. This room was very cool, leather couches, tv’s, personal wait staff and a view out into the bar. Mike had some things there for me, a signed Terrible Towel, a scarf, t-shirt and a glass. JR and I were there about 30 minutes with Mike before Jerome and his friend Cliff Stroud joined us. Cliff is a former teammate from Notre Dame who now lives in Pittsburgh.

Beers with the Bus........Check!
We ordered some drinks and food and chatted about everything but football. We spent about 2 ½ hours with Jerome and Cliff and had a great time. The coolest thing about meeting Jerome Bettis was he’s even nicer than I imagined. I know that meeting your hero’s can sometimes be a huge disappointment, in Jerome’s case it was the exact opposite. That he would say yes to having a beer with someone he didn’t know because they had it on their bucket list is still unbelievable to me. And every time I think about our visit, it makes me smile. What a great day. Thank you Jerome!

To everyone who has helped me, thank you from the bottom of my heart. I look forward to crossing off a whole lot more with you all in 2011! I hope this note finds you all well and that you had a blessed Holiday Season and a safe and Happy New Year!

Love to you all,


Tuesday, October 12, 2010

PET Scans and Bucket Lists

Hi Everyone,

October 8, 2010 is my 4 year anniversary of my original diagnosis. I’m pretty tickled to still be here 4 years later so today is a very good day. I thought I would share a couple of things with you, first an update on my health.

3 weeks ago I had Avastin treatment and they drew my CA 27.29 number again, that’s the tumor marker test. It increased to a 49 which takes me outside the normal range again. I’ve also had a significant increase in pain in my knees, hips and my entire spine. And the pain has come on fast and furious, enough so that I started taking the elevator up the one floor at work. My oncologist, Dr Bowers, recommended another PET CT scan since it’s been about 6 months since my last one and wanted to see what was going on. I had the test on Thursday and Friday morning we sat down with Dr. Bodeau, the radiologist, to review the scans.

He started with the soft tissue. Good news, there is still NO cancer in any of my soft tissues. Yeah! That makes me very happy. Onto the bones now. From an untrained eye, mine, when I looked at the scans everything looked way brighter with more activity. To someone who knows what they are looking at, Dr. Bodeau, the brightness is because they added contrast to the test and I didn’t have contrast on the last PET. So he zeroed in on known tumor locations, L3 and L5 and looked at the “SUV #’s”. SUV’s are “Standardized Uptake Values” and measure the brightness values of “hot spots”. The scale range is from zero to 15, zero being no uptake and 15 is the maximum uptake. Most cancers are above a 3 on this scale and mine are no different.

So Dr. Bodeau is going back and forth on the SUV’s of the tumors and everything that is coming out of his mouth sounds positive. Not what JR and I are expecting to hear. We’re so used to hearing “well it looks like its spread to this location blah, blah, blah, bad news, bad news, bad news” that we aren’t even hearing anything positive anymore. We need to cut that out because as it turns out, my “metastatic activity has been reduced by 20 – 35%”. This treatment path is working. Yeah again!

JR and I walked out of the Dr’s office like Rick Moranis in Ghost Busters after the building blew up; kind of dazed, and we had no idea how to react to good news. It really didn’t hit us for about an hour after our meeting what we’d heard. If I didn’t think I’d throw my back out I probably would have popped off a couple of cartwheels in celebration. We’ve been celebrating ever since.  Don't get me wrong, we still understand I am a stage four cancer survivor, but we will take all the good news and positive progress we get!

So that brings me to my bucket list. Lots of people want to share in my bucket list adventures and so I am going to put them out there for everyone to see. If you want to participate in or help me knock some of these off the list, let’s do it! I’m also looking to add onto the list in case I get close to crossing these all off. Here we go:

These are Bucket List items already done or in progress:

Trip to Italy – Spring of 2010 – trip of a lifetime! 
Venice in Springtime
Glass Blowing class – taking classes right now, so far I’ve made 2 clear paperweights.
Glass blowing in Italy.  My Classes are in Minneapolis
Learn to make Beef Wellington for JR – Done – it kicked ass too

Mt. Rushmore, Yellowstone and Jackson Hole with Mom, Robert and Aunt Kathy – went fall of ’09. It was great!
Little Aunt Kathy, Robert, Me, Mom near the Tetons in Jackson Wyoming (J.R. behind camera)

Sky Dive Solo 

Chute Opening

Looking for a soft landing
Skydive Solo.  Check!

Learn how to play the guitar, specifically “You Are my Sunshine”. JR is teaching me this one now, I just have to practice. JR said I can’t cross this one off until I sing it for you around the fire pit. You should probably start drinking now.
Ski Jackson Hole – substituted this one for a trip to Aspen with Dad this past spring.
Dad and Me in Aspen - Spring 2010
Take Helicopter flying lessons–Done on September 25th- It was awesome!
Flying above Lake Minnetonka
Learning to hover
Hot Air Balloon Ride - We did this October 7 after work in Stillwater.  It was fantastic and a perfectly beautiful fall day. I highly recommend that you do this too.  Thanks Aamodt's!
Flying over J.R.'s hometown of Stillwater
J.R. and Me above Stillwater and the St. Croix River
Just above the oldest working lift bridge of it's kind in the Country.  The water is high from Fall rain.
St. Croix River Fall 2010
Visit Minnehaha Falls – I’ve lived here for 17 years and it’s 10 minutes from my office. I have wanted to see it many times but never got over there. I thought this was a major crime to live here and not see it and have recently found out lots of people here haven’t seen it either. We saw Minnehaha Falls on October 11 which was a beautiful warm Fall day.
Minnehaha Falls October 2010
Bucket List Items Remaining in no particular order
  1. Scuba Dive the Great Barrier Reef – John & Amy Holmes want to go with us. This has been on my list since I was in high school and one of the higher priorities on my list.
  2. African Safari – This has also been on my list since high school and also a top priority.
  3. Paint Off with JR- We’re both competitive and we have this spot above our fireplace that needs a picture, we keep bragging that ours would be better than the other persons, neither of us know how to paint. (Comment from guest author J.R. - Jen is very artistic and unless Ray Charles is the judge this will be the easiest win of her life!)
  4. Drive a ’68 or ’69 Camaro – I used to want to own one of these, now I just want to drive the damn thing for a weekend. Believe it or not, this is harder than you think to do here in MN.
  5. Alaskan Cruise- I’d like to cross this one off next summer.
  6. Santa Fe, NM – Kerry and Bev
  7. Ski Jackson Hole- yes, I did substitute Aspen for this and damn it, now I want to ski Jackson Hole too.
  8. White Water Raft the Grand Canyon – I don’t need to camp out for 7-14 days like all the brochures say, I just want to go for a day, is that so hard?
  9. Visit NFL Hall of Fame – I love my Steelers!
  10. Take Dad and Roseann to Lake Vermillion
  11. Go to Napa Valley
  12. Scuba Dive a Wreck with Laz – I don’t care where it is, except if it’s in a lake, where’s the fun in that? Somewhere warm Laz!
  13. Go snowmobiling on Lake Vermillion with Bob and Mary Michels – This past summer I was telling Bob and Mary all the ways that I knew I wasn’t going to die. I won’t fall through the ice driving in a truck or snow mobile on a frozen lake, I won’t get attacked by a bear, an alligator, a mountain lion or get swallowed whole by a big python. And the reason none of these things will ever happen to me is that I won’t be in any of these places to begin with. So Bob proceeds to tell me how safe snowmobiling is in the winter, blah blah blah, and after several cocktails, talked me into doing it this winter. That ice had better be 3 feet thick Bob, otherwise I might have a stroke.
  14. Ice Fish –Can’t think of anything stupider than ice fishing. Freezing your butt off on a frozen lake with a fishing pole that’s 18” long. Who came up with this one? His wife must have been extremely ugly or he was VERY hungry. But, if I’m going to be on the lake on a snow mobile any way, I might as well get in a little ice fishing and enjoy a cocktail while I do it, because everyone has told me it’s not about the fishing, it’s about the drinking. People in MN are crazy.
  15. Go to a meat raffle. – Everyone reading this who do NOT live in MN, let me tell you what this is. Apparently we go to a dive bar, OK I’m in for that, those are fun, we buy raffle tickets, OK I’m in, again I’m competitive, and we win…..MEAT! What kind of meat you ask? Apparently you can win all kinds of meat. Bacon, roasts, steaks, hot dogs, I guess you could win venison etc. If it’s meat, you can win it. When I first heard about a meat raffle I was kind of appalled by it. But the fun factor has taken over and now I’d like to get a gang together and head out to our closest meat raffle, coolers and ice ready and let’ win some meat!
  16. Turkey Bingo with Nancie Pass. – Yup, you guessed it, same as a meat raffle only you win turkeys right before Thanksgiving. Hopefully they aren’t still alive. I like bingo, I like turkey, I like my friend Nancie. Sounds like a great day to me!
  17. Mediterranean Cruise- This should be higher on my list; I’ve always wanted to go to Greece and Italy and thought maybe this would be the only way I’d get to see both. Now that I’ve been on cruises too, I’ve got to see the color of the water in the Mediterranean.
  18. Grace Land – got to visit Elvis! 
  19. Sedona- My sister Sue told me it’s one of the most beautiful places she’s been so now I have to go check it out for myself.
  20. Egypt – I’d like to see the pyramids and the sphinx.
  21. Visit the Redwood Forest – I want to drive through one of those big trees.
  22. Hang Glide – When we were in Jackson Hole last fall we saw people doing this, I should have done it. Then I saw people doing it when I was in Aspen this spring. I should have done it then too.  Someday soon.
  23. Ski Cortina, Italy – Dad has been talking about how great skiing is here for years. I gotta go.
  24. Dog Sled Ride
  25. Visit to Montreal
  26. See the play “Our Town”
  27. Ice Skate at Rockefeller Center
  28. Train Ride through the mountains – US or Canada – don’t care which
  29. Eagle watching in Wabasha, MN – there is a spot on the river where the ice doesn’t close up and dozens of bald eagles come to hunt and mate in the spring- it’s supposed to be really cool.
  30. Visit a Volcano
  31. Learn how to make gravy
  32. Throw pottery with Tara – like glass blowing, I’ve always wanted to throw clay
  33. Go to Germany during Oktoberfest
  34. Fly in a Bi Plane – I’ve always wanted to wear the little leather hat and goggles and fly in an open cockpit.
  35. Fly in a P51Mustang WWII plane – this plane is a total bad ass, end of story.
  36. Meet Robert Plant – I’d like to do more than meet Robert Plant but this would be a good start
  37. Have a beer with Jerome Bettis – he has one of those faces and looks like he’d be a good guy to have a beer with.
  38. See an opera in Verona, Italy in the Roman Coliseum.
  39. See Ava and Joey graduate from high school
  40. Hold my grandchildren

Wednesday, August 25, 2010

Minneapolis 3-Day 60 mile Wrap Up

Hi Everyone,

We just finished up another fantastic event. August 20-22, Team Tittsburgh took on 60 miles of walking through the Twin Cities and won! The weather was mostly cooperative and we had a great time together. Team Tittsburgh had 11 walkers this year, Nicky, Stephanie, Mary, Joanne, Maggie, Cathy, Bev, Kerry, Paula and me and JR, Zach and Chris were our team gophers. What a good looking team!

Day 1:
Friday was a little moist, a little drizzle with a shower in the afternoon. All in all the temperature wasn’t too bad. We got back to camp early enough to have the Rosemount high school football team help us get our hot pink tents up. We love them! After some much needed showers and food, we enjoyed some camp entertainment, karaoke, and collected our mail from you all. Thank you! Fortunately lights out is around 9PM so we headed back to our tents and crashed hard. 

Mary and Joanne pushed themselves too hard on day 1. Joanne came into the event with a torn meniscus and made it worse, and Mary reinjured her stress fracture in her foot from the year before. Joanne was red carded and sent home, Mary begged and pleaded to NOT get red carded and that worked but she also had to go home for the night.

They actually were the lucky ones since it was really warm that night. 3 of us ended up with tents to ourselves, Maggie, Paula and I were only children, so that was quite nice. As it turned out, Nicky and Steph’s mattress would not stay blown up and neither would Crea and Cath’s. Night one sounds pretty rough doesn’t it?

Day 2:
We got up before the crack of dawn because the weather was calling for heat and humidity so we wanted to get walking as soon as possible. 6:30 was the earliest we could go, and we were walking by then. The weather was really good; it stayed cool, over cast and a little moist. All in all it was a good day.

Joanne and Mary came back in the morning and the Dr. “un-red tagged” Joanne because she had her brace and Mary had her boot to walk in so they let her stay too.  Team Tittsburgh was back on track!

For those of you who have not witnessed an event like this, let me describe what it’s like for walkers. All along the route are people cheering. Some are just sitting in lawn chairs outside of their homes. A lot of them decorate their houses or yards to support us. Kids are passing out candy or popsicles, some pass out beaded bracelets and necklaces they’ve made for us. Random families will be sitting on the side of the road with a truck load of bottled water to pass out to the walkers, music blaring. There are so many signs you can’t read them all. People drive by and honk their horns, as we cross bridges over highways, the truckers blast their horns for us. The cheer stations are packed with people; the fire houses we walk past have their trucks and fire fighters clapping and cheering and set up little spray stations if we want to walk through them to cool off. People dress up so we can stop along the route and get pictures taken with them. Cheerleading teams greet us at pit stops and have “boob” cheers they’ve made up. People dress their dogs in pink outfits. There is a group of bikers who wear pink and grey camouflage shirts with pink bras on their heads and follow the walkers around all weekend on their Harleys.


 And then there is Jody’s Couch. Jody lost her battle with breast cancer some years ago, but when she was still living and going through treatment, the only place she was truly comfortable was on her couch. This really is a comfortable couch. Her brother in law still has that couch and he brings it out to every Twin City 3-day event. He moves it from place to place throughout the route so walkers can have their pictures taken, have a rest and hear a story about a courageous young woman who lost her battle with breast cancer.

Family members and friends go ahead of the walkers on the route and write encouraging messages on the sidewalks in chalk. There are so many more examples of support that I can’t possibly write them all here. And every single person we pass thanks us for walking. It’s an amazing experience and keeps us moving our feet when we really have very little energy left. 

By the time I had gotten to the last cheer station on day 2, 18 miles in, I still had 5 miles left to walk. It was really hot by now, I was running out of energy and my back was hurting. We ran into one of the gals on our list that has been fighting breast cancer as long as I have and recently had brain surgery to remove a tumor that spread to her brain. She was very tired and weak; she had been waiting for us for 4 hours and was ready to go home. And who could blame her? Bethany has been my inspiration. I’d like to tell you that was the motivation I needed to finish those last 5 miles. Could I have done it? Yes, I could have. But I decided to rest my back and enjoy a cocktail with JR and friends at the Chalet across the street. It was the best Bloody Mary I’ve ever had in my life and I really needed the break. I think Bethany would approve.

My sneaky little team mates have been petitioning the 3-day for over a month to have me speak at camp this year. Out of the 270 survivors, they chose me to speak on Saturday night, which was a great honor. I had JR bring me home to get ready; I really wanted some dry clothes, dry hair and makeup for the talk.  JR and Chris brought me back to camp and stayed so they could experience camp life and watch my speech.

The temperature was nice by this time, cool and breezy and dinner was pleasant. I got up to do my speech at about 7:45. The time allotted was 3 minutes. On a good day I couldn’t tell my story in 3 minutes but I did get it down to 5. The speech went well, it was 9 minutes long, I hadn’t taken into account all the places applause could break out. But I got through it and it was good.  After the speech, it was time to dance! They had a dance party for about an hour and it was lights out. 
All our tent mates were back that night and Team Tittsburgh crashed hard that night too.

(Guest Author J.R. Says:  When Jen says "camp", it is really a small tent city with stores, a large medical center, Dinner / Entertainment area and of course all the pink tents.  

Jen's speech was amazing. Those of you who regularly read Jen's blog know the medical detail Jen chooses as she shares her story, and have laughed and cried along with her anecdotes.  Jen basically captured the spirit of her blog in a nine minute speech.  At the end of her speech with a strong voice and with much conviction she looked 3,500 listeners in the eye and announced; ".......Cancer is strong but so am I.  Someday cancer may take my body, but I absolutely refuse to give it my life.  I have a life worth living.  My name is Jen Anderson and I walk because everyone deserves a lifetime."  

I am so proud of Jen. Most of you get a part of Jen through friendship, a blog update, work, or family.  I am lucky and blessed to have Jen in my life every day.)

Day 3:
17.3 miles to go! Most of us started out together because we were in pretty good shape and could keep pace. Mary decided not to push it and only walk the last 5 miles (her foot was really bothering her). Joanne should have done the same but because she’s stubborn as hell, she kept walking with a bad knee the size of a small watermelon. Joanne and Cath got a late start because Cath’s feet were blisters with feet attached and she was still in medical when we left at 7:00 am.

Paula and Bev were making quick work of things and pulled ahead of the rest of us and was just cooking along! Steph, Nicky, Crea, Maggie and I were moving along at a good pace. Kerry’s little legs were trying to keep up but she fell behind for a while. At lunch (10 miles) we all caught up with each other. My back was killing me again but I had good energy otherwise. After lunch I decided to jump in the truck with JR, rest my back for the next 4 miles and hook up with the girls at the last cheer station and walk the last 3 miles in. 

Mary and I met up and went on our way since she’s a gimp in her boot and we figured the others would catch up to us. The last 3 miles were great! Looking out at St Paul and getting cheered in, amazing. Fortunately for Team Tittsburgh there is a bar less than a mile away from the state capital who loves pouring cocktails for walkers. Hard to believe I know. As it turns out, lots of walkers know where this place is and we hooked up with many fun teams. The bikers were there too!
 We have to be into the closing ceremony area by 4 pm so we had about 90 minutes to spend at the bar. As we headed out, Joanne and Cathy were trucking along with the most amount of determination I have ever seen. Team Tittsburgh was back together again with our support team and we finished the walk crossing over into victory lane together.

While we were having team pictures taken, one of the local news stations took an interest in us and interviewed me for the evening news. That was lots of fun. If you would like to see the interview, please click in the link here:

Closing ceremony was really emotional and very well done. I was happy that I didn’t have to go into the survivor circle by myself, Bev who is also a survivor went in with me. After the ceremony we went to Mancini’s for a delicious steak dinner and champagne toast. A great ending to a great weekend.
Out of the 11 walkers on Team Tittsburgh, 7 made it all 60 miles. Nicky, Stephanie, Maggie, Crea, Bev, Paula and Cath. Everyone was a rock star this weekend but I would like to award Cath the MVP of the team. If you knew what she physically did to herself to get all 60 miles walked, you’d be sending her co- pay money and gift certificates for a masseuse and pedicure. Mary, Kerry, Joanne and I did not make all 60 miles but we managed 40+ miles each.

Team Tittsburgh rose close to $27,000 and donations are still coming in.  The Susan G Komen for the Cure event raised $6.2 million dollars this weekend! Thank you to everyone who contributed to the cause, we could not have done it without you. Thank you to my team, I am honored that you walked with me and called yourself Team Tittsburgh!

Lastly, I got my tumor markers back last Tuesday and I am pleased to tell you that my markers are in the normal range two months in a row. Yeah!

Thank you again for your love and support, I really appreciate it. Have a great day!

Love to you all,